Saturday, August 09, 2008

GFCF Diet and Autism Research

When Conor was first diagnosed with an autism disorder 10 years ago there were many purported autism treatments floating around as there still are today. Then, as now, only ABA was regarded as evidence based in terms of the quality and quantity of research supporting its effectiveness. For that reason I have been a strong supporter of government funding for ABA intervention for autistic children. I have always believed though that research into other interventions should continue; but not if it meant sacrificing some autistic childrens' development by depriving them of the well documented benefits of ABA. And some alleged treatments and interventions are harmful, or pose the risk of harm, to autistic children.

One of the most persistently advocated treatments over the past 10 years based on parent evidence, celebrity endorsement and some professionals is the GFCF diet. I do not try to demean parents, or celebrities, who advocate for a GFCF diet. But I have always wondered about the risk to autistic children arising from such a restricted diet. A study released earlier this year by researchers from the National Institutes of Health and Cincinnati Children's Hospital Medical Center suggested that there is legitimate cause for concern about the use of such diets including poor bone development:

The researchers believe that boys with autism and ASD are at risk for poor bone development for a number of reasons. These factors are lack of exercise, a reluctance to eat a varied diet, lack of vitamin D, digestive problems, and diets that exclude casein, a protein found in milk and milk products. Dairy products provide a significant source of calcium and vitamin D. Casein-free diets are a controversial treatment thought by some to lessen the symptoms of autism.

Given the numbers of parents who claim that the GFCF diet is effective in treating their children's autism, and the potential risk to children from a diet that may not meet full nutritional requirements, at least if not done correctly, it is important that some quality studies be done to to confirm, qualify, or refute these claims. I am pleased to see the Science News report that such a study has begun:

Researchers at The University of Texas Health Science Center at Houston have embarked on one of the first double-blind, clinical studies to determine whether gluten and dairy products play a role in autistic behavior

...

“A lot of children with autism have gastrointestinal problems such as constipation and diarrhea. Whether these problems are related to brain development is open to question,” said Katherine Loveland, Ph.D., co-investigator and professor of psychiatry and behavioral sciences, pediatrics and biomedical sciences at the health science center. “There are neurotransmitters and neuroreceptors in the gut that correspond with those in the brain. There are some scientific reasons to think that some kids may benefit from this diet.”

For the double-blind study, funded in its initial phase by supplemental funds granted by the Department of Pediatrics, researchers will enroll 38 autistic children ages 3 to 9. They will look at the influence of gluten and milk proteins in the intestinal function. Gluten is a protein in wheat; casein and whey are proteins in milk. Casomorphin, a peptide in milk; and gliadomorphin, a peptide in gluten, are thought to be related to changes in behavior in these children. Children will be taken off gluten and dairy products before the four-week study and then half will be given gluten/milk powder and half will be given a placebo powder.

If this study helps provide quality evidence for the effectiveness, or lack thereof, of a GFCF diet in treating autism that in itself will help autistic children and their families whatever the conclusions reached. If the study confirms parental anecdotal evidence of effectiveness then more parents will be likely to consider such a diet for their autistic children. If the diet is shown to have no effect in treating autism then parents currently using the GFCF diet with their autistic children and focus their efforts, time and finances on evidence supported treatment.

Either way, the advancement of our knowledge about the extent of the effectiveness of a GFCF diet in treating autism, based on quality evidence, will benefit autistic children.

7 comments:

I am happy to see there will finally be some scientific proof on this issue.

I am the type of parent that prefers to seek treatment on scientific findings. While funds are always limited for some families I feel exploring the GF/CF diet without scientific proof not worthy of dollars I could spend for my child's treatment elsewhere.

I am looking forward to the outcome and if proven benefits exist I will again look at changing the funds we use for treatment to include this diet. Until then I will stick with IBI/ABA teachings, occupational therapy and speech therapy using IBI/ABA techniques.

Obviously with the amount of parents advocating about this diet some researchers have finally listened and feel the trial is worth while. I do hope this will have a positive outcome for these parents and they can now justify their therapy approach to parents who ridicule them.

I have often heard that study from Cincinnati Children's Hospital Medical Center that children on the GFCF diet are at risk for calcium deficiency. Yet the counter point that, in my experience at least, most children on the diet are taking calcium supplements everyday never seems to be mentioned. I wonder if that study would have reported different results if that was taking into account.

I also have to wonder if they have the cause and effect backwards. If you are having GI issues with dairy couldn't that mean you would also have issues with absorbing the calcium that is contained in the dairy products?

While it is good that there are more studies being done on the GFCF diet I wish they were better designed. For example the new one mentioned seems to be too short (4 weeks) to be able to see any major difference nor does it seem that they are trying to find the subgroup of the autism population that could benefit from the diet.

Dear Conor's dad,I really appreciate how carefully you are looking at the research. The U Cincinnati study reported that boys with autism have less bone thickness than boys without autism. This is an important finding and I hope that more research will follow.

I agree with one of the commenters: Children on the spectrum typically have GI issues and many have difficulty with absorption. Calcium, for example, requires having enough hydrochloric acid in the stomach (as do magnesium, zinc, copper, potassium, iron). If serum levels of other minerals or vitamins would also measured, would we also find that these boys were deficient in additional nutrients? Most likely so.

This is why it's so important to look at GI issues in children with ASD as not just being co-issues, but for some children may be one of the primary issues.

As a nutrition professional, I see significant changes in behavior and GI symptoms when we change diets. I find that the GFCF diet is easier to manage than the SCD diet...although I'm not downplaying how hard it is to change to either.

At www.nutritionandmind.com I have several free reports and information about GFCF diets and also about the use of nutrition boosters to support GI function. Although the nutrition boosters were not originally developed for kids with ASD, the company (Nutricia) began getting spontaneous calls from parents and doctors stating that children were improving. These nutrition boosters have free amino acids, free fatty acids, vitamins and minerals. For a child who is a picky eater or who has GI issues or who is failing to grow, adding nutrition boosters can be a great way to jumpstart towards health.

Also I've posted the report from the Austism Research Institute. In it are the collected reports from thousands of parents stating which modalities have helped their children the most. ABA, sensory integration and diet seem to lead the list.

i'm inclined to agree the study will be too short in length. I was told to try gfcf for at least 3 mos. to see any improvement. The diarrea improved in the first two weeks. At four months on the diet now (with supplements) I can tell when she's had a cracker at school, cause she becomes clumsy and moody/spacey. I would be willing to participate in any studies. She is ASD 3 1/2 yrs old. Annie and Beverly, long beach CA annsjamminagain@yahoo.com

i'm inclined to agree the study will be too short in length. I was told to try gfcf for at least 3 mos. to see any improvement. The diarrea improved in the first two weeks. At four months on the diet now (with supplements) I can tell when she's had a cracker at school, cause she becomes clumsy and moody/spacey. I would be willing to participate in any studies. She is ASD 3 1/2 yrs old. Annie and Beverly, long beach CA annsjamminagain@yahoo.com

You might look at the Vitamin D Council's web pages about autism (www.vitamindcouncil.org). See also the links under Noteworthy News to reports of adequate vitamin D levels protecting people from getting the flu.

101 Noteworthy Sites on Asperger's & Autism Spectrum Disorders

Facing Autism on Facebook

Why ABA For Autism?

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

"We have to look also at environmental factors, and from my point of view, the interaction between the genetic factors and the environmental factors ... It looks like some shared environmental factors play a role in autism, and the study really points toward factors that are early in life that affect the development of the child"
Joachim Hallmayer, MD, associate professor of psychiatry at Stanford University in California

Even Out Environmental and Genetic Autism Research Funding

Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones.

We need to even out the funding.

Irva Hertz-Picciotto, UC Davis M.I.N.D. Institute Researcher

My Autism Pledge For Conor

Today I pledge to continue;I Pledge to continue to fight for the availability of effective autism treatments;I Pledge to continue to fight for a real education for autistic children;I Pledge to continue to fight for decent residential care for autistic adults;I Pledge to continue to fight for a cure for autism;I Pledge to continue finding joy in my son but not in the autism disorder that restricts his life;Today, and every day, I Pledge to continue to hope for a better life for Conor and others with autism, through accommodation, care, respect, treatment, and some day, a cure;Today, and every day, I Pledge to continue to fight for the best possible life for Conor, my son with autistic disorder.

Dr. Jon Poling : Blinders Won’t Reduce Autism

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.